Thoughts on Providing Care to Disenfranchised Patients
Suffering from HIV in Rural Alabama
Barbara Hanna, MD
[Citation: Hanna B. Thoughts on providing care to disenfranchised patients suffering from HIV in rural Alabama. Innovations in End-of-Life Care. 2002;4(3), www.edc.org/lastacts]
I began my career as an infectious diseases physician in New Orleans in the early 1980s. At that time, AIDS was just emerging as an epidemic and I began seeing patients who were infected with HIV, though we didn’t identify it that way at first. When I relocated my practice to northeast Alabama in 1990, I wanted to continue to work with this same patient population. I quickly discovered that providing HIV care in rural Alabama would be even more challenging than it had been in New Orleans. These peoples’ lives are very difficult even without the complication of HIV infection. They live in relative isolation, poverty, with few resources, jobs, or educational opportunities. The distances that separate rural communities greatly complicate the provision of care. Many of our patients don’t have telephones or nearby neighbors, so just getting a message to them is often a challenge. No public transportation and little local governmental support are available. These many voids and an absence of opportunities to address them can lead to problems with substance abuse. Many of these persons have been incarcerated and most have a distrust of "the system."
One of my challenges as a care provider at the AIDS Services Center (ASC) has been to identify what local support is available. For example, in one county the hospice organization may be willing to care for patients suffering from HIV/ AIDS, but this may not be true in the next county. These organizations are in a constant state of change, so services that are available today may not be there the next time my patients need them. Early on, the challenge of accessing consistent services led me to believe that we should provide the services ourselves and take those services—general medical care, mental health and substance abuse treatment, as well as palliative care—to the patient rather than asking the patient to come to us. This idea led us to establish a series of small satellite clinics around our service area, so that ASC staff can care for patients in their home communities. This approach works fine as long as the patient is well enough to attend a clinic on a monthly basis and does not require care in between, other than an occasional telephone call.
However, we found that when patients became too ill for this approach, we had difficulty meeting their needs. One patient, for example, had been discharged from prison in another state, had a long history of substance abuse and a severe personality disorder. This man did not want aggressive medical care for pulmonary nocardiosis but was in severe pain and was wasting away. He was living at home with his mother and clearly dying. More than six feet tall, he weighed only 120 pounds, yet the local hospice refused to enroll him and assist with the activities of daily living and pain management, because he had not lost "enough" weight according to their entry criteria. We were eventually able to locate another hospice agency that would accept him, but this did cause a delay in services. When we were able to develop our own palliative care program, we gained flexibility. Access to the program was based on an assessment of our patients’ individual needs.
Despite these goals, our initial vision for the palliative care program was different from the program we have actually developed. When we planned the program we planned it in terms of a traditional hospice model, thinking that the patients we would want to enroll would be terminal or near terminal. Almost immediately we were confronted with a dilemma. We had a patient who appeared to be close to terminal from the standpoint of his hepatitis C disease, yet he was doing very well on highly active anti-retroviral therapy (HAART) for his HIV. Should we continue this anti-retroviral therapy? Did such active treatment conflict with the goals of our palliative care program? We decided that it did not. We felt that his anti-retroviral therapy was contributing to his quality of life and should be continued temporarily. We believed that this patient could benefit from the palliative care program and at the same time be enrolled and continued on HAART.
Because we carefully thought through this choice it made the decision easier when we were confronted with the next patient whom we felt would benefit from the palliative care program. This person was suffering from cryptococcal meningitis and it was uncertain whether he would improve with treatment or not. This therapy might improve his condition so, he wanted to be aggressive and try, but he still needed a lot of supportive care. Yet, he no longer needed to be in the hospital and was anxious to go home. We could meet his needs through our palliative care services, but this definitely required a broadening of our vision of the purpose of the program. We decided to adapt the program and meet the needs of this patient, which included the need for daily IV medication, pain control for headaches, and antiemetics to control nausea. Some patients need primarily intensive nursing services such as IV medication, others need only symptom control, and some need a combination of both. We now believe the program might best be described as an "integrative care" program because it aims to meet this wide array of needs for gravely ill patients. The program is flexible and our starting point is to provide patient-centered care, with specific treatments and services flowing from that goal. We tailor the available resources to what patients want and need.
This effort to provide patient-centered care creates another dilemma, in particular when working with this population of patients—often people with multiple problems, such as homelessness, histories of drug abuse, of neglect, and not having their health care and perhaps other basic needs met. How do we provide these patients with what they want and need, and yet not allow ourselves to feel abused or manipulated? We are anxious to meet their needs and to provide exemplary care. However, we recognize that we cannot always satisfy patients’ wants, and our patients will not always be happy, even when our care is good. Perhaps our greatest challenge remains the balancing act of maintaining flexibility and, at the same time, setting limits.
My greatest frustration is to spend hours working with a patient, yet not succeed in satisfying that person, and instead be cursed. One patient regularly cursed at the nurse with whom I work closely. We recognized a pattern to this hostility—he cursed at the nurse after he had had a fight with his boyfriend. This kind of hostile behavior is hard on staff morale. In a rural area, we cannot afford to lose staff if we hope to keep our program viable. I continue to struggle with this problem, but without a comprehensive answer as yet.
The palliative care staff does have time to become involved with patients and to listen to their personal problems. We do, however, have mental health counselors, a psychiatrist, an addictionologist, a minister, and social workers available to assist patients with various elements of their lives. One problem with referring to others for these problems is that not all clients will accept these specialized services. The complex scenario of patients with underlying behavioral disorders, HIV dementia and/or encephalopathy, and a variety of CNS infections that may be only partially responsive to therapy creates a situation that does not always respond to even the most well-reasoned approach.
In thinking about what keeps me in this work, in the face of these challenges, I find the answer is that this role came to me. I started treating patients with HIV infection because I was there. I had just finished my infectious disease training when the first cases of HIV were reported. I find the disease interesting and I feel that I do a good job so I find it personally rewarding. I am also aware that there are no other physicians in Anniston trained to take care of these patients. I think most of all I do this because these patients are so often shunned and since I saw my first HIV infected patients I have always felt, "There but for the grace of God go I."
[Post a Comment]